Keith Sullivan was born early at 26 weeks gestation at the UMMC NICU. Due to his extreme prematurity, he suffered several complications including chronic lung disease and failure to thrive, resulting in a tracheostomy. In 2008 Keith was placed under the care of Dr. Kevin Pereira, the director of Pediatric Otolaryngology at the University of Maryland Medical Center and an expert in airway management. Dr. Pereira ultimately performed a laryngotracheal reconstruction, after which Keith was able to have his tracheostomy tube removed. During his NICU stay, Keith received care from many other providers who treated and operated on him including Drs. Marcello Cardarelli, Sam Alaish, and James Moore. Now, Keith is healthier than ever and has even started school. His mother Amanda shares his story below.
What was your son's condition?
Keith was born at the UMMC NICU 14 weeks early. At 26 weeks, he was a preemie. Because he was born so early, his lungs were not completely developed. He was intubated in the NICU, which caused scar tissue build-up in his airway/ trachea. Because of this, he had to undergo a tracheostomy in August 2006. They kept the tracheostomy tube (trach tube) in his neck for one and a half years. During this time, Drs, Lasso-Pirot, Safta, Blanchard and Blaisdell all provided subspecialty care for Keith's pulmonary and GI issues. We still needed to see an ENT to find out why his airway hadn't opened up, so Dr. Lasso-Pirot referred us to Dr. Kevin Pereira in early 2008, when Keith was almost two years old. Dr. Pereira did a bronchoscopy to see what was going on. He found out that Keith's airway was 95 percent blocked with scar tissue!
What happened next?
Dr. Pereira advised us to try balloon dilation. This involved placing a balloon down Keith's airway and also putting medicine in the airway. It was supposed to put pressure on the scar tissue to push it back to normal and physically try to open the airway. The doctors performed five of these procedures. In between each, Dr. Pereira would check to see if Keith's airway gained some space, and gradually, the scar tissue decreased. After the fifth procedure, Dr. Pereira said we could keep using the balloons or go ahead and have the LTP (Laryngotracheoplasty) airway reconstruction surgery. We decided on the surgery. Keith had the LTP airway reconstruction surgery in July 2009. During the surgery, the doctor used some of Keith's rib cartilage to build the new airway. Dr. Bryan Ambro, a UMMC plastic surgeon, was the one who harvested the rib graft for the reconstruction.
Life after surgery
It took two months for Keith to heal. He still had the tracheostomy tube at the time, which doctors temporarily kept in to help support the new rib graft; to hold it together, like a stent.
Between August 2009 and October 2009, doctors blocked off Keith's trachea so he could use his real airway to practice breathing. Once he was able to do that for a few days in a row, we were able to have a sleep study performed to make sure he didn't have sleep apnea. He passed the test. A week later, we were told he could have the trach tube taken out for good!
By October 2009, everything was out. All that remained was a tiny hole where the tube had been.
There has been a big difference since the surgery. Now, Keith can breathe fine. At night, he uses a pulse ox machine (a machine that reads oxygen levels and measures breathing). He's also taking medication to help his lungs and his breathing. Looking at him now, you'd never know he had those problems. He goes to preschool and looks just like the other kids. He doesn't know what happened; he's doing better.
What did you think of the doctors and the staff?
Dr. Pereira was a really good doctor and Judy Oakley, his nurse practitioner, is just as amazing. They are used to working on a team, and they are all very nice. Whenever I called with a question, they called me back the same day. Judy's on top of things. I've even called in the middle of the night, and they called right back. If they couldn't help over phone, they told us to come in to the ER, even in the middle of the night. That was very helpful. They were always thorough, answered questions and made sure I understood everything.It's nice to have a team that encourages you to ask questions and understand what's going on. This is especially important when it's your child and you're dealing with a critical situation. The doctors and nurses are very involved with their departments.